ArticlePatient education and counseling2019
Exome sequencing disclosures in pediatric cancer care: Patterns of communication among oncologists, genetic counselors, and parents.
Article in Patient education and counseling, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
15 citing papers in PubMed, 19 citations in OpenAlex.
- Adaptation of the working alliance inventory for the assessment of the therapeutic alliance in genetic counseling.Journal of genetic counseling · 2021Trial
- Parent/caregiver needs during pediatric genome-wide sequencing: A scoping literature review.Journal of genetic counseling · 2026Article
- In the end, it is the word that remains: communicating bad news in pediatric oncology.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- Delivering Trio Germline Whole Genome Sequencing to Patients Newly Diagnosed With Childhood Cancer: Healthcare Professionals' Perspectives of the PREDICT Study.Cancer medicine · 2025Article
- How does personal utility depend on clinical setting? Evidence from 3 cohorts.Genetics in medicine open · 2025Article
- Exploring the "shared" in shared decision-making in the care for children with chronic diseases or disabilities: what are the roles of parents and professionals?European journal of pediatrics · 2024Article
- A content analysis of parents' reflections on pathogenic and uncertain pediatric oncology germline sequencing results.Familial cancer · 2024Article
- Parents' expectations, preferences, and recall of germline findings in a childhood cancer precision medicine trial.Cancer · 2023Article
- Views of Adolescents and Young Adults with Cancer and Their Oncologists Toward Patients' Participation in Genomic Research.Journal of adolescent and young adult oncology · 2023Article
- Families with complex needs: an inside perspective from young people, their carers, and healthcare providers.Journal of community genetics · 2022Article
- Pediatric Oncologists' Experiences Returning and Incorporating Genomic Sequencing Results into Cancer Care.Journal of personalized medicine · 2021Article
- Characterizing patient-oncologist communication in genomic tumor testing: The 21-gene recurrence score as an exemplar.Patient education and counseling · 2021Article
- Examining access to care in clinical genomic research and medicine: Experiences from the CSER Consortium.Journal of clinical and translational science · 2021Article
- Germline whole genome sequencing in pediatric oncology in Denmark-Practitioner perspectives.Molecular genetics & genomic medicine · 2020Article
- Cancer Genetic Counseling-Current Practice and Future Challenges.Cold Spring Harbor perspectives in medicine · 2020Review
Corrections and comments
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Authors and funding
12 authors at 4 institutions in 1 country.
Funding
Abstract
objectiveTo examine communication patterns and behaviors during disclosure of exome sequencing (ES) results to parents of pediatric cancer patients, and describe common themes in parental communication.
methodsUsing mixed methods, we analyzed transcripts of sessions where parents of pediatric cancer patients received ES results from an oncologist and genetic counselor. Seventy-six transcripts were analyzed for frequency of clinician information-giving, partnering-supportive talk, and active parent participation. A subset of 40 transcripts were analyzed using thematic content analysis.
resultsDisclosures consisted mostly of clinician talk (84% of total talk), which was focused on providing information (62% of clinicians' utterances) with occasional partnering-supportive talk (7% of clinicians' utterances). Most parents assumed a passive, listening role (16% of total talk). Themes in parental communication included expressing relief and the significance of an answer, concern about sharing results and responsibility for inheritance, and seeking clarification of health implications of results.
conclusionOur finding of low levels of active parent participation during ES disclosures highlights the need to improve patient/parent engagement and understanding in a genetic setting. PRACTICE IMPLICATIONS: Clinician communication strategies that could encourage parent participation and understanding include checking for parent understanding, partnership-building, and tailoring ES discussions to address parent concerns and preferences.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.